Gold standards Framework and prognostication I will go through some facts to make us reflect on what we should be looking for to predict need for the patients with advanced illness. By: Sian Williams Macmillan CNS/ Education Lead Beacon Supportive and Palliative Care Service.

Definition of End of Life Care People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people with: Advanced, progressive, incurable conditions General frailty and co-existing conditions that mean they are expected to die within 12 months Existing conditions if they are at risk of dying from a sudden acute crisis in their condition Life-threatening acute conditions caused by sudden catastrophic events. General Medical Council, UK 2010 Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated care We will go through what we need to consider- next slide

People with dementia have a slower trajectory over 8 years. Illness Trajectories “Dying is very complex. People are likely to die in old age after a prolonged decline beset by multiple conditions” Leadbetter & Garber, 2010 People with dementia have a slower trajectory over 8 years. We appreciate that identifying a patients trajectory may be complicated and we see hear that there are variances between conditions Understanding of these helps with planning Organ- this reflects how there is a down hill with acute events and possible sudden deaths, which is why we need to be open and honest with pts. The dementia reflects why it is so difficult as the pts possible 10 year trajectory needs reviewing regularly and revisit QoL, ACP and Mental capacity We need to be aware that unless someone has a sudden death that the trajectory is often reflected through: Periods of relative stability Intermittent crisis- Phases of changing needs =critical events and stepped changes in disease progression should be recognised as triggers for end of life care approach Ultimately end of life care These trajectories show the importance for us to reappraise the treatment and realistic interventions for the individual Move onto to next slide to explore further

Triggers The surprise question (GSF) ‘Would you be surprised if this patient were to die in the next few months, weeks, days’? Critical events or significant deterioration Choice/need from the patient for comfort care only, not wanting curative treatment Specific clinical indicators related to certain conditions. “Would you be surprised if they were to die in the next 6-12 months?” The surprise question can be applied to years/months/weeks/days and trigger the appropriate actions. The surprise question – an intuitive question integrating co-morbidity, social and other factors. If you would not be surprised - what measures might be taken to improve their quality of life now and in preparation for possible further decline. Are they on the Supportive/palliative care register – ideally they should be as at this stage we are looking at weeks rather than many months, but the research reflects that non- cancer pts are being missed out. Prognostic guidance = GSF also includes Critical events – we need to question what is causing this? How many Admissions to hospital how often in the last year. What were the reasons for admission? Choice / Need - The patient with advanced disease makes a choice for comfort care only, not ‘curative’ treatment, or is in special need of supportive / palliative care eg refusing renal transplant

Functional Assessments Barthel Index describes basic Activities of Daily Living (ADL) as ‘core’ to the functional assessment. E.g. feeding, bathing, grooming, dressing, continence, toileting, transfers, mobility Karnofksy Performance Status Score 0 -100 ADL scale . WHO/ECOG Performance Status 0 -5 scale of activity PULSE ‘screening’ assessment - P (physical condition); U (upper limb function); L (lower limb function); S (sensory); E (environment). Frailty Individuals who present with Multiple co morbidities with significant impairment in day to day living and:  Deteriorating functional score e.g. performance status – Barthel/ECOG/Karnofksy What is the Barthel Index? The Barthel Index consists of 10 items that measure a person's daily functioning specifically the activities of daily living and mobility. The items include feeding, moving from wheelchair to bed and return, grooming, transferring to and from a toilet, bathing, walking on level surface, going up and down stairs, dressing, continence of bowels and bladder. Top score is 20 the lower the worse the pt is. How is the Barthel Index used? The assessment can be used to determine a baseline level of functioning and can be used to monitor improvement in activities of daily living over time. ECOG out of 5 – 0 no complaints - 5 dead Karnofsky out of a 100 = healthy 50 = 3 in ECOG, 10 moribund and 0 dead (goes down in 10s)

Prognostic Indicators [PI] Detailed holistic assessment General physical decline Need for support Sentinel event Eligible for DS1500 Advanced disease with deteriorating symptom burden No further active treatment General Clinical Predictors: Progressive weight loss: greater than 10% loss over 6 months Serum albumin level < 25mg/L Reduced ‘performance status’ > 50%; dependence with most activities of daily living (ADL) Co-morbidity Prompts for discussion- recognising it is difficult and impossible and unhelpful to estimate accurate prognosis, but there are indicators to help us plan and realise that the person will die from their condition. We need to observation, listening and asking open questions to inform us of how the person is changing Holistic assessment: capturing physical, psychological, spiritual and social triggers Assessment - is important to be able to identify how the person is coping, how they are physically feeling within themselves, what strengths do they look to, what is now important to them- (has this changed) Sentinel event - A term for a ‘headliner’ event that may cause an unexpected or unanticipated outcome, death or serious physical or psychological injury i.e. transfer to nursing home, bereavement, serious fall Symptoms- have they changed, worsened Biological markers- we need to monitor bloods to compare and support what we may be seeing- Albumin, renal function Performance status – used in oncology MDT so good to relay your findings. Co morbidity is the biggest indicator of mortality Patient insight- did we hear them say “ what….” How long have I got?’ this is a cue that they may know something we have blocked! Prognostic Indicator Guidance (PIG) 4th Edition oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al for Disease specific clinical indicators

Gold Standard Framework - Prognostic Indicator Guidance Chronic Heart Failure NYHA Stage III or IV - SoB at rest or minimal exertion Repeated hospital admissions with symptoms of CHF Difficult physical and psychological symptoms despite optimal therapy Chronic Respiratory Disease Disease severe (FEV1 <30%predicted) Recurrent hospital admissions Fulfils long term Oxygen therapy criteria MRC grade 4/5- SoB after 100metres on the level Signs and symptoms of right heart failure Combination of anorexia, previous ITU/NIV/resistant organism, depression > 6 weeks of systemic steroids for COPD in the preceding 6 months Examples of disease specific clinical indicators will be discussed http://emedicine.medscape.com/article/163062-overview The New York Heart Association (NYHA) classification for heart failure comprises 4 classes, based on the relationship between symptoms and the amount of effort required to provoke them, as follows[1] : Class I patients have no limitation of physical activity Class II patients have slight limitation of physical activity Class III patients have marked limitation of physical activity Class IV patients have symptoms even at rest and are unable to carry on any physical activity without discomfort Signs and symptoms of heart failure include tachycardia and manifestations of venous congestion (eg, oedema) and low cardiac output (eg, fatigue). Breathlessness is a cardinal symptom of left ventricular (LV) failure that may manifest with progressively increasing severity. ITU = Intensive care use NIV = Non invasive ventilation

Prognostic Indicator Guidance - cont Chronic Kidney Disease CKD stage 5 (eGFR<15ml/min) Not choosing or discontinued dialysis Increasing severe symptoms from co-morbid conditions nausea and vomiting, anorexia, pruritus, reduced functional status, intractable fluid overload. Persons condition is deteriorating with 2 indicators- Pts with stage 5 kidney disease who are not seeking or are discontinuing renal replacement therapy (RRT) From choice or too frail Symptomatic renal failure Surprise question NB many with stage 5 CKD have stable impaired renal function and do not progress or need RRT

General Neurological diseases [PI] Progressive deterioration in physical and or cognitive function despite optimum therapy Symptoms – Complex and difficult to control Dysphagia leading to aspiration pneumonia, sepsis, breathless Speech problems leading to difficulty communicating. These are the general changes but we should try and identify the more specific changes such as Slide ..

Prognostic Indicator Guidance - cont Motor neurone disease Marked rapid decline First episode of aspirational pneumonia Increased cognitive difficulties Low vital capacity (below 70% of predicted spirometry) Dyskinesia, mobility problems and falls Communication difficulties Parkinson’s Disease Significant complex symptoms Drug treatment less effective or complex regime Reduced independence More ‘off periods’ as condition less controlled Dyskinesia, falls Psychiatric signs (depression, anxiety, hallucinations, psychosis) Slow, weak, exhaustion Parkinson’s disease Recognition that the condition has become less controlled and predictable Dyskinesia = An impairment in the ability to control movements, characterized by spasmodic or repetitive motions or lack of coordination Multiple sclerosis Significant complex symptoms Dysphagia leading to aspiration pneumonias, recurrent admissions and poor nutritional status Communication difficulties e.g dysarthria +/- Fatigue Cognitive impairment, notably onset of dementia

Prognostic Indicator Guidance - cont Dementia Unable to walk without assistance & Urinary/faecal incontinence & No consistently meaningful verbal communication & Unable to carry out ADL (barthel < 3) + any of the following: Weight loss Pressure ulcers stage 3 or 4 Recurrent infection Reduced oral intake / weight loss Aspiration pneumonia For facilitations information if asked as Barthel scores may be used in care homes Decreased ADL may be measured using the Barthel score. <3 is indicative of concern. Each section focuses on one area and scored then added for final score. The more independent the person the higher the score. Out of 20 if using 0,1,2,3. Important to talk to people whilst they capacity so they can discuss how they want to be managed in later stages

Frailty Stroke Performance status deteriorating & combination of at least 3: Weakness Significant weight loss Slow walking speed Low physical activity Depression Minimal conscious level Medical complications Lack of improvement within 3 months Cognitive impairment/ post stroke dementia

Predicting needs rather than exact prognostication This is more about meeting needs than giving defined timescales The focus is on anticipating patients’ likely needs so that the right care can be provided at the right time This is more important than working out the exact time remaining and leads to better proactive care in alignment with preferences Rainy day thinking (GSF) People tend to give undue weight to prognosis and too little to the importance of planning for possible need. Focus should be pragmatic, instinctive predicting the rate and decline for the person in front of us. To do this we need to look at their medical history, and assess their last year as a comparison of change. Rainy day thinking – anticipatory and insurance type thinking relates more to meeting likely needs and planning ahead. Hope the best, plan for the worst!

Assess all patients: recall medical history and compare with last assessment! Mrs C – A 91 year old lady with COPD, heart failure, osteoarthritis, and increasing signs of dementia, who lives in a care home. Following a fall, she grows less active, eats less, becomes easily confused and has repeated infections. She appears to be ‘skating on thin ice’. Difficult to predict but likely slow decline

What are the main concerns for the patient? Important to re-assess physical, psychological, spiritual and social needs Review what are the changes over the last 3 months? Anticipate Key concerns/developments Listen to families concerns Contact GP to come and discuss plan with family and manager/team lead/ and DN if residential home Complete Proactive Anticipatory Care Plan documentation PACE with GP and significant others. Ask the group to say what they identify in their client population, thinking of planning how one is cared for and where. Most complaints and families stress is due to lack of planning and uncertainty Communication and Assessment KEY

Quality End of Life Care Where we cannot alter the course of events we must at least (when the patient so wishes) predict sensitively and together plan care, for better or for worse For those people who do not have capacity we need to consider an end of life care plan.

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Reference Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al Performance status Karnofsky and ECOG: http://oncologypro.esmo.org/Guidelines-Practice/Practice-Tools/Performance-Scales http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/performance-status PULSE http://www.bmj.com/content/343/bmj.d4681